Pages

Friday, July 9, 2010

Catch Up of My Life in the TERRIBLE past TWO WEEKS

So I last left off with June 20. Well I had gotten out of the hospital that Thursday. Ever since then I have been having terrible problems which brings us up to now...so that makes it 2 weeks of "not goodness". (you will notice I make up a lot of words...I'm going to create the "Allison Dictionary :) )

Before I go into explaining all of the sickness...and catching you all up...I need to catch you up on one more thing. I began working at a gift shop named Gifts and Giggles when I was I think 17. Not too long after I started working there, I became the assistant manager and began monogramming. I worked at G&G all through the rest of high school, college, and even continued helping when I was working at the hospital. As you all know nursing has been cancelled due to my health. It was really hard at first...and I was would ask...really God? I knew that nursing was His will for my life, but He showed me that HE DOES have plans and wills for our lives, but that they change. Things never stay the same...it's part of life.

I am now at peace with leaving nursing behind. He gave me that peace. Also another fact of that is I either want to live or die. With me going back to nursing I'm putting my health at a high risk and putting myself and health in major jeopardy. So I thought about it and guess what...lol...I want to live!

So now back to G&G. This shop is like my second home. The owner Mrs. Becky (Rebecca Ramey) has become literally my second mom throughout all these years. To cut it short...I don't want to go on disability because I just don't. When God tells me to I will. So Mrs. Becky let me come back to the store. What's nice though is I monogram 99% of the time so I don't have to be right in the public with my lowered immune system. I can tuck away back in the room and monogram away. So I am at G&G and it makes me happy :) Working is working...I am proud of myself and thank God for allowing me to complete college, but as I said things change and so does God's will for your life.

Ok...so now catch up on illness. Let's just say from the 21 - 26 of June it was a lot of pain. My stomach either felt like someone was stabbing me repeatedly or that it was filled with a blazing fire. I ended up having to take oxycodones that I keep for when the pain gets unbearable.

27th - this week up to today- This was just a craze. That Monday I went to the bathroom 7 times...I don't know how that was possible because I didn't know that much could be in me...cutting it short again...just everyday I felt like I was dying. Pain continued severely....fatigue to the point it was a task to take a shower...weakness to the point I would sit in the shower...just all around I felt like I was slowly dying.

Ok...so during these two weeks you have seen where I have typed the word pain a lot. Well it has been unbearable. Monday was a holiday so everyone was off. This was one of the worst. Fatigue, weak...bathroom. All my bowels have been liquid so I hadn't been taking my miralax....well on this day it decided for some crazy reason it would impact. I was hurting so bad...I stayed on the toilet and I called the on call doctor. Prior to this I had called Dr. Rodriguez about six times. - that is six messages in a 2 weeks span with still no call - Call again...the people are like well it says that he has opened and received....that made me mad. So I call the on call doctor tell him the pain I'm in...that my pain meds are running low...which I knew it would do no good and I told the on call receptionist that. I was like its going to do no good and I have left six messages. So on call doctor did nothing for me except tell me to take one of my pills...I was like well duh I have already done that stupid. Still no call from Dr.Rodriguez. I have like 4 oxycodones left and I'm guarding them and not taking them in fear that a worst day will come and I need to save them.

Oh haha let me tell one more thing about this...the on call receptionist was like well try calling your primary care doctor for the pain meds....I was like MAM LISTEN...MY PRIMARY CROHN'S DOCTOR IS RODRIGUEZ...MY PRIMARY DOCTOR NOT FOR CROHNS DOESNT HAVE THE RIGHT TO BECAUSE THIS IS DEALING WITH CROHNS!!!! Then she was like well who prescribed it before....I was like Dr. Rider...that was after a surgery....I HAVE NOT HAD A RECENT SURGERY! Gosh...she was making me ill so then she said well that is all I can do and I said a wordy derd...which I didn't care at that point and hung up. 30 seconds after is when the on call doctor called...LOL!

Also...on the day where I was severely impacted...I ripped and damaged my fissure again so I started bleeding again from it and have terrible rectal pains ever since. I was thinking REALLY?!?! It got to the point mom and I went to CVS bought gloves and KY jelly and I told her I was going to nurse myself and do a digital fecal removal...I couldn't take it anymore...well I chugged miralax and I finally depacted...whatever you want to call it.

Yesterday - My Treatment. This was my fourth treatment. Now let me tell you the stressful story behind my treatment. Well for my first 3 treatments we were receiving them from an IV Infusion company. They mixed the Remicade and diluted it...they delivered it...they would bring a hand held pump so I could walk around if need be (which doesn't happen) and everything was taken care of. Mrs. Rene just had to take care of me and hooking me up.

WELL SINCE EVERYTHING HAS TO BE COMPLICATED NOW...my FOURTH TREATMENT CHANGED GROUPS. I got my Remicade through a stupid Pharmacy company this time which means they are treating my infusion like a prescription...all they sent was the Remicade in the vials...no pump....no dilution...no non-coring needle to access my port...NOTHING!!!!!!! Mrs. Rene was having to get supplies from the Home Health draw it up herself, dilute it, get a huber needle from the hospital, it was terrible. I felt so bad for her. Also...get this...we had to let the chemo run by gravity which is a little crazy...she is a genius though...she got a wire hanger bent it and hung it on a nail so I could have my bag hanging for my drip. I just started crying. I told her that I was just about to give up....my doctors don't care, insurance switches my chemo to a stupid incompetent company, and I have been in straight pain for TWO WEEKS!

I'm not going to give up, but its just sometimes you wonder when a break will come. There was much more in all this junk but I'm trying to make this blog post not too long.

So treatment ended at like 7 last night. Didn't get hardly any sleep last night which is normal after a treatment...it just stoves up your body and you feel real restless, weak, and blah. So today will be my rest day!

On another note...I don't want for my blog to be depressing...I started this blog to help people see inside the world of Crohn's Disease. To promote it's awareness. As I have said before Cancer is the spotlight drug and until we start speaking out...no one will know. It is my job for God to allow me to tell my testimony of how He saved my life and continues to and also tell of the disease that is allowing me to grow deeper in my relationship with Him. I tell everything as it is. I'm an honest person...always have been so I don't feel the need to back down or elaborate...I believe in the truth. So thank you to my sweet readers who truly see the pain and suffering this disease brings. I will fight it and continue to....just sometimes the fight gets tiring...love you all!!!!

9 comments:

hey. so glad you posted. i hate that you have not been doing so good. but like i always say, you're not alone. i have been doing awful the past few days and really should be in the hospital right now. i hope your doctor was finally able to offer you some relief. if you like you can email me anytime atkforbes0127@yahoo.com. i hope you'll email sometime soon.-kelly

p.s. good luck if you ever decide to go on disability. it's (literally) almost impossible to get on, even for people who have cancer or any other crohnic illness. ...it's crazy! i'm not on it but i have heard that you shouldn't even apply unless you have an attorney to represent you. it took a good friend of mine 2 years to get on it and she had cancer. sadly, she is now in Heaven, but she didn't even get her first check until the week that she passed away. our gov't just sucks sometimes!

are you serious?! well I have had numerous people tell me to get on it...it is my stubborn self that doesn't want it. In fact I know of a man living where I live that has crohn's and is on disability...so that is weird....hmm...

as far as you and I...I think our Crohn's must run together. I literally have felt like my body was slowly dying the last two weeks. I know you know the feeling. I tried catching up on as much as your blog posts as I could and girl don't feel alone...my crohn's and your crohn's are together...when I tell people no one else's compares to mine I always bring you up because you are the ONLY person I have found that I can relate with! I'm sorry you have been having bad days...you sound like me...I make myself tough it out when I know I shouldn't...but its like you go to the hospital and they think you are an addict or they just think you are faking so I get sick of it! I miss you and our talks! I'm praying for you girl! I love you!

Yes, many people tell me that I should apply for disabilty as well, but I am just afraid of the night mare it can be to get on it. I am just thankful to have a job that allows me paid leave, BUT I know that I will not receive that forever, so I really need to start exploring my options out there. I just keep telling myself that I will get better...

By the way, I am actually in the hospital right now. I got VERY sick this afternoon and I didn't even have time to call my doctor and tell him I was coming, my sister just threw our things in the car and we were on our way. When we got here the ER doctor gave me the meds that SHE thought I should have, even though I kindly told her what my doctor usually orders for me. well, she ordered me Morphine and the nurse gave me that without telling me and I had an BAD allergic reaction to that, even, though it clearly states in my chart that I am allergic to Morphine. But you know, they acted as though it was no big deal, they just gave me Benadryl and Salumedrol for it...

The ER doctor also kinda glared when I told her that I respond well to Dilaudid, the pain medicine that my doctor usually orders for me. She finally ordered it for me, but it wasn't the correct dosage. So, then I had to call MY OWN doctor and he finally called the hospital and straightened things out right. I really thought that I wouldn't have to actually be admitted but once they got the results back from the CT scan, the results were bad. so, I really had no choice but to be admitted. I just hate being here at the hospital. It's awful!

I just don't understand why your doctors office just couldn't call your meds in for you. I mean why in the world does it matter where you got your first prescription from? You are in severe PAIN RIGHT NOW and it's from your Crohn's disease so, your GI doctor needs to be the one picking up the phone and calling you in some meds! Crazy lady! I'm glad I am not the one who had to deal with her ;)

Please let me know how everything goes with you. I hate that you waited two weeks to update me! I wish you lived closer so that we could atleast go through this together! even though I actually feel like I already know you since we basically HAVE and GO through the exact same things with Crohn's. SO many times I just want to pick up the phone and call you and ask you something about my crohn's and then I remember that I haven't actually met you in person and you live in another state...ha! I'm such so happy that we have been able to share stories on here...you are a jewel!

Love, Kelly

p.s. please let me hear from you soon, instead of having to wait two more weeks...i'm going to get you for that ;)

Well I live in small town podunk Jackson, AL. I don't know one place that will give you paid leave...even when I was nursing I still didnt' get it so I'm screwed either way. I have an appointment with my surgeon monday about my internal fissure.

I'm so sorry you are in the hospital. I hate that for you...I hate being in the hospital just because they don't have a clue what you are going through so they have no empathy. So I will be saying special prayers for you that they treat you KINDLY!!! Something that is hard for crohn's patients to receive.

As far as calling...yes mam...I know we havent met and live in two different states but you can sure have my number. I actualy have free long distance on my house phone so I can call you for free. I probably need you most of anybody...I'm sitting here crying writing to you because it just seems like nothing gets better Kelly! I just told my daddy that it seems like the closer I get to God...the more I live for Him...the more I wake up and try to do good for Him, the worst things gets. I just don't understand anymore. I'm not giving up on my faith....I'm still accepting of my crohn's...but I just need a little help...I just need to feel a little better...

Kelly I'm so numb to pain. When I DO take a pill...I get so happy because its like I didn't realize I was in THAT MUCH PAIN! Please send me your number if you don't mind because I would love to keep in touch with you on a verbal hear each other's voices in touch.

I love you girl and keep the faith becuase its a hard road!!! My house is 251 246 0868! My email is amk_2007@hotmail.com if you want to send it to there....

Post deleted! As far as sleeping I understand...I have bags under my eyes...my treatment was just thursday and they mess you up for a good little bit. Mom and I were talking today to and it is weird...like my face and body always swell after a treatment because that is just a side effect of chemo...but she was telling me she had noticed my face swelling before the treatment so we are a little concerned now about my kidneys...who knows girl...all this junk just runs together. So I def. know about not sleeping. I hope you will find time to rest! Can't wait to talk to you...I hate it for you that your little boy has to see you go through all of this...I can't imagine.

I know its hard enough just for my parents and andrew watching me go through it....but I love you and hang in there!! by the way what did the ct show?

Yeah, I can't imagine how hard it is for Brendan to see me up here, BUT in a way I like it that he is able to come up here for just bits at a time, so that he can see that I am "okay". When he's here I try to be as cheery and happy as I can. Like today we had a pillow fight on my hospital bed and he laughed and laughed...but in a way that is sad, because this is like becoming a normal for him. ah!...can't talk about that anymore :(

The CT scan showed that I have another abscess and the inflammation has spread and gotten even worse than it was the first part of June...basically meaning that the Remicaide is NOT working for me because even though my Prednisone taper is now 10mgs, my crohn's should NOT be flaring up if the Remicaide was really doing its job. you know? and I can't stay on Prednisone like this forever.

So, now...I guess I am just hangin out at the hospital wondering what we're gonna do next...wondering what my options are. and it's the weekend and one of my regular doctors is out of town today and tomorrow and I just hate this waiting game. I want answers...now!

anyway, if you get this comment tonight please feel free to call me. I am just hanging out at the hospital right now by myself watching THE HILLS marathon, everyone else has gone home. Hope to talk to u soon!

"He's Still Working On Me" A Little Bit About Little Me

I created this blog to tell MY story to anyone and everyone that God desires.

Age 6: I accepted Jesus Christ as my Lord and Savior. I was introduced to my first love, my strength, and my best friend. My life changed!

Age 18: I met the one my heart desires. Andrew James Hope. I was introduced to my companion, my confidant, and my soul mate. My life changed!

Age 21: I was diagnosed with an incurable disease. Crohns disease. I was introduced to pain, decisions I never thought I would have to make,
and something I would never be able to rid of. My life changed!

These are three key points in my life that have added to the foundation of who I am today. Briefly I will tell you that my Crohns is very specific in the sense that it is not like all the other Crohns cases. My case is almost to the point of being termed untreatable; therefore, physically I am in pain and mentally/emotionally I am exhausted. So to say things are hard right now is an understatement.

However! I AM receiving blessings daily! God is seeing me through this as well as Andrew, my family and my friends!

*If you are a follower of my blog and you are suffering with a disease that needs more awareness, leave me a comment and let me know! We will place your ribbon, disease, and name on the wall! God gives each of us a journey! Everyone's journey in life is different! Let's bring awareness to these terrible diseases, disorders, syndromes, etc. and ultimately together FIND THE CURES! God Bless!